Behind the mask

As those who have read my previous post know, I have recently been diagnosed with autism and inattentive-type ADHD. Most of the people who saw my announcement on social media and read my post were kind and supportive. I am really grateful to you all. But there were one or two people who didn't seem to understand what this diagnosis means for me. 

Receiving a diagnosis of autism is not like receiving a diagnosis of, say, cancer. Autism isn't an illness. It's not something that people acquire or develop in later life. I was as autistic at three as I am at sixty-three. All the diagnosis has done is belatedly recognise a disability I have had for all of my life. 

Nor is autism something that people can overcome with medical treatment or therapy. I will be autistic for all of what remains of my life. There is no cure. Counselling might help me work out what I can and can't do, and indeed I have been advised to seek counselling. But it won't make me any less autistic. 

Autism is not a lifestyle choice. I did not obtain a diagnosis because it was "fashionable", or to justify an unconventional lifestyle. I was not looking for sympathy or excuses for my persistent social and emotional difficulties. And I was not trying to avoid taking responsibility for my behaviour. Far from it. 

I wanted to find out why, despite the considerable time, effort and money I have spent trying to learn how to "behave better", I still upset people without meaning to and act in ways that others consider weird. Why I still find social engagements exhausting and draining. Why I still melt down when things get too much for me. The event that sparked my decision to ask for a diagnosis was a hugely embarrassing meltdown in a doctor's surgery.  

Now, as I come to terms with the knowledge that my social functioning and emotional management are permanently impaired, I find myself wondering why I spent so many, many years trying to fix something that was never fixable. I suppose I hoped that somehow, someday, I would get better. Now that hope is gone, and in its place must come acceptance, not only on my part, but on the part of all who know me. My "difficulties" are part of me. They are, we might say, who I am. 

As a child, and even as an adult, my problems with social interaction and emotional management were dismissed as "bad behaviour" that I could correct through my own efforts. As one of my managers at SBC Warburg said, "Frances needs to work on her social skills". 

To motivate me to improve my behaviour, I was provided with a judicial mix of sticks and carrots. Did this work? Well, sort of. I copied the behaviour of others, mostly successfully, and eventually learned how to conform to social expectations. But oh my goodness people's behaviour was confusing. It appeared to be a mixture of double standards, unspoken expectations and value judgements, none of which I understood.

Initially, I modelled my behaviour on how older people treated me. But this turned out not to be a good strategy. Repeating to others things my mother had said resulted in punishment rather than approbation. And at the age of about 9, patting one of my school teachers on the head because I was pleased with something she had said did not go down well. From this I learned that the way my parents and teachers treated me was not necessarily a good model for how I should treat others. I found this confusing. 

Since modelling my behaviour on that of older people didn't work, I decided instead to copy the behaviour of children that older people regarded as "good". As long as I could remember what they did (or didn't) do that older people received approvingly, and replicate it appropriately, I could avoid the sticks and I might even qualify for a carrot. But this is harder than it sounds. It meant accurately observing other children's behaviour and recalling it at the right time. I didn't always know what the "right time" was, so now and then I replicated supposedly "good" behaviour at the wrong time and ended up in trouble again. And "good" children aren't always well-behaved (this is one of the weird double standards that I have never understood). So I was sometimes punished for bad behaviour when I had copied what I thought was good behaviour. I found all of this very confusing. 

Some aspects of my behaviour proved resistant to change. Despite being repeatedly told I must learn to control my temper, I remained prone to meltdowns. Working in groups was difficult and stressful, and I had a distressing tendency to say or do things that upset or annoyed people. And I didn't socialise much with other students, preferring to pursue my own interests independently. Because of this, I rarely received the promised carrots: on the only occasion that I ever came close to receiving a medal for Good Conduct at my secondary school, some girls in my class took it upon themselves to complain to the Head about my behaviour. My form teacher tore them off a strip in front of the class, but I still lost the medal.  

As an adult, I sought help. I spent eight years in individual and group therapy to try to understand why I struggle with relationships and learn how to manage them better. The therapeutic model was Transactional Analysis, which is rather a good model for someone who doesn't naturally understand how people interact. "What do you say after you say hello?" asked Eric Berne, the founder of Transactional Analysis. This is a question that I had often asked myself. I genuinely didn't know. 

I found Berne's extensive documentation of "pastimes" and "games" that people play enormously helpful. Many of the pastimes seemed silly to me - I'd much rather talk about something interesting - but if that's what I had to do, then I would learn to do it. And learning how to avoid getting into nasty games* turned out to be essential for my survival in the workplace. 

One of the members of my therapy group took issue with the way in which I approached meeting new people. "I don't get you," she said. "You don't do what I expect." Puzzled, I asked her what she expected. "I would expect you to find out about people. You know, by questioning them." It had never occurred to me to do this. In fact I find being questioned by a stranger unpleasantly intrusive, so if I had thought about it at all, I would have assumed that others dislike it too. But apparently this was wrong. So I decided I could learn to do this "social questioning". I watched what she and others did and copied them. 

Now, I've learned how to ask people where they are from and what kind of journey they have had. I've learned to listen attentively while they talk enthusiastically about their children, their pets and their holiday plans. I can even talk about the weather, if I really must. I've also learned how to make eye contact, since it seems to be expected. In a social gathering, I can engage most people in conversation - what is known as "working the room". And I can honestly say I usually enjoy it. But I still find entering existing conversations hard, and I still at times find myself isolated. And it's exhausting. Last week, I attended social gatherings on two days running. The next day I was so tired I spent much of the day asleep. 

But I wonder whether I should have responded to my therapy group member differently. I didn't do what she expected, but equally, she didn't do what I expect. My idea of getting to know someone is not to question them, but to have a conversation about something interesting. The challenge is to find something that both of us are interested in. I'm afraid that doesn't generally mean their children or their holiday plans, though I might enjoy talking about their pets, as long as they are happy for me to talk about animals (which have long been one of my absorbing interests). But I have a range of other fascinating topics we could talk about...  

She expected me to adapt my behaviour to meet her expectations. And because I have been criticised all my life for my social behaviour, I assumed that this was reasonable, and tried my best to do so. But is it reasonable, really? Why should I adapt my behaviour to her expectations, while she makes no attempt at all to adapt hers to mine? Perhaps it's not me who has the problem, but those who are unable (or unwilling) to understand that the way I interact with the world is different from theirs. 

In my individual therapy sessions, we discussed what I called my "mask" - the fake "self" that I had created in years of trying to conform to social expectations. I saw my real self as having a seriously disfigured personality, and I believed - with, to be fair, some justification - that if I allowed people to see my real self, they would reject me. So I hid her away behind a mask of social conformity. 

I dared not let the mask slip, but it became more and more difficult to maintain it. By the time I was in my mid-30s, the mask was fractured and my real self was showing, to the detriment of both my home life and my employment - which rather reinforced my view of her as disfigured and destructive. And I was exhausted and burnt out. 

My therapist tried to help me to come out from behind the mask. But I now know that what he really helped me do was build a better mask. Looking back, it seems odd that my therapist apparently never suspected I might be autistic, even though many, many autistic women create masks like mine. Perhaps my original mask was better than I thought.

But no mask is perfect. Good though my therapy-built mask is, it slips now and then. And it is terribly costly to maintain. I am so tired... 

Maybe, eventually, I will come out from behind the mask I have so carefully constructed. But I'm not ready yet. So when you meet me socially, I will be the person you've always known me to be. But if you really want to understand me, then remember that what you see is not what I am. I've given you a glimpse in this and my previous piece of what is behind the mask.

And if I disappear, and don't answer your calls or your emails, it's not because I don't want to know you, it is because I've taken off the mask for a while. I will be back. 

Related reading: 

The Ones Who Walk Away From Omelas - Ursula Le Guin

The Ones Who Stay In Omelas - Coppola Comment

* In Transactional Analysis, "games" are almost universally negative, many are hurtful, and some are deadly. 

Diagnosis

I now have a formal diagnosis of autism and and inattentive-type ADHD.

I have suspected for a very long time hat I am autistic. It is easy to dismiss my lifelong record of serious interpersonal problems as the consequence of a difficult upbringing, and indeed that was the main thrust of eight years of therapy in which I was described as having "borderline tendencies". But I've always thought something didn't quite add up. The social and interpersonal difficulties I have aren't really consistent with any description of borderline personality disorder that I have ever read. 

I first wrote about the possibility that I might be autistic in 2014. I didn't publish that post, so I've used it as the basis for this one. It was triggered by a couple of odd events; a firestorm sparked by a post I published on Pieria (which I eventually had to take down), and a silly quiz that gave my mental age as that of a baby. Yes, I know - it was only a silly game and the zero score is almost certainly because I gave a set of answers it couldn't cope with. But that's the point. No-one else I spoke to got a zero score. And if the software couldn't cope with my answers, it is probably fair to assume that it was a pretty odd selection. 

I've written here about the economics firestorm. With hindsight, I was annoyed by the arrogance of the professor who had published his findings without including either his data or his workings, and who appeared to have made some pretty crass mistakes. And I guess that annoyance came through in the post. But the point is that although I read the post several times before publishing it, I didn't foresee how my comments might be taken. I meant them not as a personal insult but as an expression of concern. But that is not how others saw them - and it simply never dawned on me that they could be seen as an ad hominem attack. 

Such misreading of the way in which others may react to things I say or do has been a problem all my life. I don't expect others to react personally to remarks that I don't intend personally, and I am therefore shocked and hurt when they respond in kind to what they perceive as an unwarranted personal attack. And people don't understand that I am genuinely bemused by this. They think I set out to cause trouble. But I really don't. I don't do subtle. I don't even understand subtle. I say what I think, and I don't foresee the consequences. Well, sometimes I do - I am getting better at thinking before I speak. But it doesn't come naturally. Constantly monitoring what I say or write to ensure its acceptability is exhausting, and once in a while I simply lose control. That's what happened on the Pieria post - and has happened repeatedly since, as a look through my Twitter account shows all too clearly. In fact it has happened throughout my life, though less frequently as I get older. And the consequences can be extremely serious. Lapses like this have at times cost me my livelihood and very nearly my sanity.  

When I first suspected I might be autistic, I decided to do some research to find out how it presents itself in adult women. This is of course completely typical of someone with autism...

I already knew that autism is under-diagnosed in girls and women because they generally present differently from boys and men, but I found out lots more about it. I discovered that because girls tend to be more severely criticised for social and interpersonal difficulties than boys, and perhaps also are more motivated to be accepted by peers, they typically learn early on to copy the behaviour of others and put on an act. They do so at considerable personal cost - constant anxiety, fear of getting something wrong (again), exhaustion due to constantly maintaining an act, insecure identity (if you are constantly acting you forget who you really are), poor self-esteem (if you constantly have to hide your real self, it must be defective) and depression. But because autistic girls become very good at disguising their real selves, they are easily overlooked. And even if they do have a formal diagnosis, it often is not autism but some kind of mental disorder caused by the stress of maintaining the disguise. Autistic girls and women are frequently misdiagnosed with borderline personality disorder, bipolar disorder, even schizophrenia. This confuses the symptom with the cause. 

I recognise all of this. And when I read a post by Tania Marshall about Asperger's syndrome in adult women, it was like reading a description of me. Most of the characteristics she listed apply to me. Tania's post appears to have been taken down now, but this list by Samantha Craft is similar.

There is one particular set of characteristics that both Tania and Samantha identify that I think warrants further explanation, because it is not how we normally think of people on the autistic spectrum. Tania said that some autistic women are hyper-empathic:

"Highly sensitive, may not be able to listen to or watch the news, listen to the radio, read the newspaper, watch violent shows/movies or horror movies, see hurt or injured animals, abuse, war, trauma, are sensitive to the emotions and “emotional atmosphere” of the environment, experience referred emotion and psychic “6th sense” abilities, may have strong intuitive and/or psychic abilities".

And Samantha similarly says autistic women can be "highly intuitive to others’ feelings" and "highly empathetic, sometimes to the point of confusion".

We normally think of autistic people as lacking empathy. But I don't think this is quite right. I think it is more that we feel both our emotions and other people's extremely intensely, to the point of pain, and have absolutely no idea how to manage them, or even (in my case) how to identify and name them. This sort of hyper-empathy goes along with hypersensitivity in other respects too, such as extreme sensitivity to light, sound or touch. I am hypersensitive to both light and sound: I can see the flicker in fluorescent lights (it gives me migraines) and hear well above normal adult human frequencies - one of my friends described me as having "ears like a bat". The description of hyper-empathy in the paragraph quoted above also applies to me (although I do watch the news). And this brings me to the final piece of the puzzle.

I've known for years that I have synaesthesia. I see words, letters and numbers in colour. I hear in colour, too: pitches and keys in music all have different colours, and because of this I have perfect pitch. And I have a third type of synaesthesia, too, which I use when teaching. I can feel in my own body what someone else is feeling in theirs. When I am teaching singing, therefore, I "know" just by listening to the sound what the other person is doing to create that sound. I don't need to ask them, or even look at them. I can feel it. Teaching someone whose voice is damaged or very distressed is actually painful for me and I can even lose my own voice. I suppose that makes me a safe teacher, but the physical cost is considerable.

Research has established a link between synaesthesia and autism. It seems that synaesthetes retain into adulthood connections between different areas in the brain that normally disappear in childhood - if you like, our brains are relatively undifferentiated, and therefore do some very weird things. And it is thought that autistic people have a similar sort of hyperconnectivity, which might explain both our intensity and our giftedness. So perhaps that silly quiz actually said something important. Perhaps I really do have a child-like brain.

If that is right - that I have an immature brain - it would explain a lot. Children are vulnerable to exploitation because they don't foresee, and therefore can't protect themselves from, the behaviour of others. And they say the wrong things and behave inappropriately, because they don't understand social norms. I do understand social norms, now, but I've had to learn them the hard way, and I still get it wrong on occasion. So "childlike" is perhaps a good description. In which case I need protection, just as a child does - by which I mean some way of deflecting the flak that inevitably comes my way because of my unfortunate tendency to say the wrong thing at the wrong time and cause yet another firestorm.

When I first drafted this post, I was unsure whether to ask for a formal diagnosis. I thought it might  help people to understand that I don't mean to hurt, but it is an inevitable consequence of my - disability (there, I've said it now). But then I convinced myself it was simply too late. A middle-aged woman who had never even been considered as possibly autistic, let alone diagnosed..... I doubted if my GP would take me seriously, and I didn't want to put myself through the agony of being disbelieved and even laughed at. And at that time, a private diagnosis was financially far out of my reach. 

So I put it to the back of my mind. And as the years passed, I became known - once again - as someone who is clever but blunt to the point of rudeness, tramples on people's feelings, and picks fights with people. I know that many of those who follow me on Twitter do so because my feed is like an episode of Gladiators. Who is Frances fighting with today? What ridiculous war has she waded into this time? These days, even factual statements about banking attract vicious personal attacks. 

I've also come to hate freelance writing, just as previously I came to hate freelance singing teaching and before that freelance banking & IT consultancy. There's a theme here, and it's not the work itself. Recently, I've realised that the goal of my therapy journey - to "change the way I work" - really meant running away from employment. Freelancing gives me control of my working environment in a way that employment can't. But it also means I constantly have to "put myself out there" to get work, which means building networks and relationships - and not upsetting people. The price of accidentally destroying an important relationship is very, very high. And the instability of freelancing is terrifying. I long for stability and acceptance. 

When I was young, the form of autism that I have was not recognised as a disability. More severe forms of autism were, but children who would now be diagnosed as "high-functioning" autistics were then variously regarded as "gifted" and "naughty", usually both. I certainly was: my primary school reports are glowing about my intellectual ability but extremely harsh about my social behaviour. It never seemed to occur to my teachers that a child with persistent social difficulties might need something other than constant reprimands. I know, from talking to other people, that this was a common experience for people of my age. Many older people who are almost certainly autistic have never received a formal diagnosis. They have gone through their lives struggling with interpersonal relationships and avoiding social situations. As I have. 

But the world has changed, and autism is now recognised as a disability. And now that I have a formal diagnosis, people - including prospective employers - should have a better idea what to expect from me. The demons will never be vanquished, but I perhaps have a stronger shield against them now. 

 Maybe it's time to stop running away.